Post TT: someone’s pulled my plug out

Hi Jodi. 

Listen, I know where you come from but 8 weeks is soo early to expect feeling great again. You've had a major surgery 8 weeks ago, your body needs time to adjust and it might take longer. 

Levothyroxine dose is usually tricky to set up at the beginning, I don't think I ever saw a post from one of use that said the dose was perfect at the first time when prescribed. Needs time to check how your body reacts to what dose. It is doable but again might take time.

We are all just so impatient. I was and still am.

Calcium - I also had problems in hospital, after 2 night in my parathyroid gland kicked in and calcium is around 2 ever since, still on a low side but surgeon happy with that and I don't take any supplements anymore.

I've heard from loads of people that have some lung metastatic disease but it can be well controlled for years, and also RAI can get rid of them as well. There's no point in worrying about something that might not even happen. Easy said, I know.

Time is a great healer and that is the fact.0

At times when I was not waiting for more treatment, I remember I stopped thinking about cancer every ay, and I moved on with my life (until I found out there is more cancer to treat).

There is a light at the end of the tunel.

Best wishes

Izzy. 

Thank you Izzy. I’m so terribly impatient! Your message is a good reminder of how recent this is all is for me (physically and mentally). 

I think I struggle so much because everyone seems to downplay thyroid cancer at diagnosis. I certainly haven’t felt prepared for quite how low and poorly I would feel. For example, being told I could probably return to work at 2 weeks post-op was wildly optimistic. The fact I wasn’t back at work (and still am not) then felt like a failure on my part.

I don’t really have a concept of what is low or high thyroxine symptoms. Yes, I’ve read about them and know the lists of symptoms, but mine sometimes jump between the two. I guess it would be helpful to talk to an endocrinologist to get a better sense of where my thyroxine replacement is going and how we’ll know when I’m on the right dose.

Thank you for taking the time to reply: it means a lot.

Dear Jodi,

I can't claim to be an expert and I'm sure there are people here who have far more experience.  My own experience is also recent but have some longer knowledge of thyroxine adjustment issues as my mum had to be have hers removed and has been on replacement therapy for 40+ years. (not due too cancer btw but extreme hyperthyroidism).

The tips she and my endocrinologist gave me are helping me so I pass them on just in case:

- note down your symptoms every day so that you can present them to the docs;

- insist on regular testing and dose adjustment;

- be religious on the regular timing of taking your daily pills and watch out for interactions (so calcium and iron supplements at least 4 hours afterwards or in the evening, as I do);

- have your vitamin D and iron levels monitored.  and take vitamin D daily as it helps with the uptake of thyroxine. 

My mum's experience prepared me for the fact that getting the dose right is more of an art than a science.  If you're pre-menopause, I believe it can be even trickier.  But patience is also not my strength so I hear you.

I was hugely hyper on a 125 dose, reduced after 2 weeks to 112.5 and feel much better for it.  All the best for you and take care,

Lottie

To anyone who wants to downplay thyroid cancer, you can give my example how in 4 years I had 3 major  surgeries, RAI that didn't work, and now the hardest of them all external beam radiotherapy, that made me so poorly I literally thought I will die from malnutrition. I know, a bit dramatic but I felt like that 2 months ago.

So it's not "just" thyroid cancer. It is literally cancer. And it is hard and ruins people life's.

As for going back to work at 2 weeks: that is CRAZY!

And I know as I also done it and believe me it's a crazy idea. 

We, as in girls, are really trying to be these superwoman, major surgeries feeling crap but oh let's just go back to work to show them all.

Literally the diagnosis helped me to calm down and breath. I understood that if I don't think about myself no one will. I mean my family do take care of me, but the last decision goes to me.

Work is important, but without health it doesn't mean nothing.

Focus on getting better, do it for yourself.

All the best.

Izzy. 

Hi Jodi. My completion thyroidectomy was 3 weeks ago after hemithyroidectomy in June. 

The clinical nurse phoned yesterday really pleasant lady who I could speak to openly which has helped. My exhaustion level is also ridiculous I decided to attempt to push through it 3 days ago and found myself sleeping for 24 hours just getting up for water etc the day after so that obviously doesn't work. The nurse advised against doing this again. 

I don't know if this helps but on this occasion I've bucked the trend  my TSH and T4 are where they are happy for them to be for now. I could have cried I think I probably did as she spoke hearing her delight. I unfortunately had severe serotonin syndrome during the first operation ( probably the first time this will be mentioned)  the second operation was completed totally differentially without methylene blue so I worried about my PTH level and given calcium which yes caused total constipation something not needed if you have RAI in the future.  

I'm in awe of my surgeon and Anaesthetist  for not only saving my life during the first operation but saving my parathyroid glands ,the second operation did mean going back and removing scar tissue from the first and obviously the other side removed.

Please don't try to be superhuman I think all those here are anyway our bodies have been through trauma and need rest my nurse sanctioned it so it's official!! I know I've been blessed to get a good TSH and T4 level from the start but my exhaustion is ridiculous so I do feel for those trying to get this sorted.

I think we are walking very similar paths in terms of scar tissue and that strange neck spasm/ stiffness/ careful eating/ drinking and vibrating voice . 

I wish you the very best with your recovery .

My kindest regards

Flukka 66